THE DOCTOR'S WORLD

THE DOCTOR'S WORLD; Working in Public to Explain AIDS-Like Ills

By LAWRENCE K. ALTMAN, M.D.,

Published: August 18, 1992

ATLANTA, Aug. 15—
The search for the cause of a mysterious AIDS-like illness is one of the rare occasions when the public witnesses scientists at work, drawing on their knowledge and technology to determine whether a newly recognized problem has important implications for the public's health.

But many of the scientists and public health officials involved in the search say they are uncomfortable about conducting their research under a spotlight, particularly when only the most preliminary and tentative findings are available for public discussions. These investigators contend that the public knows very little about the scientific process. They say that by holding public discussions like the meeting here Friday, scientists risk eroding public confidence by exposing the false leads and dead ends that are a standard but rarely acknowledged part of research.

Dr. Anthony S. Fauci, head of the National Institute of Allergy and Infectious Diseases and a top AIDS researcher, acknowledged that there were those who felt the meeting was premature. But he said: "If we didn't have the meeting, we would be accused of having a cover-up. So if you want to march with us through the scientific arena, you must understand that there are starts and stops, false leads and wide openings where people get quick information. That is the nature of science."

In the end, even those most uncomfortable about public proceedings were congratulating each other for conducting a useful, if preliminary, conference.

The meeting, at the Centers for Disease Control, focused on reports that surfaced at an international AIDS meeting in Amsterdam three weeks ago of a small but growing number of cases of severe immune deficiency without evidence of infection with the two viruses known to cause AIDS, H.I.V.-1 and H.I.V.-2.

Until recently, complacent scientists thought they had conquered infectious diseases. However, the recognition of AIDS, Legionnaires disease and several other new diseases has shaken scientists from their overconfidence. An underlying concern of the meeting here was whether the mysterious syndrome was an old one that has occurred in low numbers; whether the numbers, though fewer than 50, are on the rise, and what relevance it has to AIDS.

Major goals of the meeting were to determine where and how often such cases occur, whether some might be caused by hitherto unknown viruses, how the syndrome might be prevented and whether the syndrome was new. The meeting also focused on published reports from three groups of scientists about possible footprints of a virus among cases of the mysterious syndrome or closely related illnesses.

But discussion at the meeting went beyond the publications. In an unusual step, some participants opened their laboratory notebooks to present additional findings of the most preliminary nature, information that came from tests performed this week and that is still being checked out. And the scientists underwent questioning from panelists including Nobel Prize winners and members of the National Academy of Sciences.

Under such grilling about one experiment, a scientist acknowledged he had not used full scientific controls, thus possibly introducing an element of bias into the results.

Arguably, the greatest thrills for a scientist are in discovering a new microbe, a new disease, cure and prevention. Yet few scientists ever experience such a thrill. Many more know how quickly the exhilaration that comes from believing they are on the verge of making such a discovery vanishes when the initial findings cannot be confirmed.

In a way, scientists are responsible for the public's lack of understanding of the scientific process, because they generally present the final results neatly in a standard format of lectures and scientific articles long after the destination has been reached, without a hint of any wrong turns.

But wide publicity about research into the mysterious syndrome has frustrated many scientists because "the media is shedding light on what normally goes on in private before we have completed the work," Dr. Harold Jaffe, a top AIDS official at the Centers for Disease Control, said in an interview.

A dominant theme that emerged from the meeting was the need for scientists to keep an open mind on the public health significance of the mysterious syndrome and to avoid focusing solely on a microbe as its cause. But Dr. Fauci said it would be difficult for scientists to withstand public demands not simply for facts as they slowly emerge but for conclusions about what the facts mean.

Many participants agreed that scientists were dealing with a real syndrome, not unrelated cases of people whose levels of immunologically important CD-4 cells were naturally very low. However, discussion exposed scientific ignorance about how the count of CD-4 cells in the blood was affected by chronic ailments. Limited evidence suggests that tuberculosis and other infections can lower the count, sometimes dramatically, but precise data are lacking, as they are for how much the CD-4 count changes with age.